Wed, 22 Jul 2015

I contributed two chapters to the recently published book Being Autistic –
Nine adults share their journeys from discovery to acceptance.
This book is aimed at adults having recently identified as autistic. To
help readers reflect on the terminologies used by most autistics and most
of those referring to us, and what are some of the implications of these
choices, I wrote the following chapter:

I am not a person with autism. I am an autistic person.

Receiving a diagnosis or identifying as autistic – can be very
empowering and often entails talking and/or writing about autism. There
are many words and expressions to choose from. You might have noticed
that the contributors to this book express different preferences in
their writing. To help you navigate your way through this terminology,
here are a few of my choices and their implications.

You can choose whether to use identity-first (I am an autistic
person) or person-first (I am a person with autism) language. As autism
is an integral part of who we are – the way our brains and bodies work –
many autistics are keen on the use of identity-first language and refer
to themselves as ‘autistics’. I find person-first language (being called
‘a person with autism’) offensive as it implies that we should strive
for a state when we are ‘without autism’. A useful way to think about
this is that you would say a person with a cold, but not someone with
Jewishness, or with left-handedness. Of course I also respect each
individual’s choice of the language they use to refer to themselves.

This distinction is linked to how you consider our differences and
how we fit in society. I know of two basic models. The medical model,
the most common in our society, explains the difficulties we may have as
caused by us not fitting in. To improve our lives, we must change (e.g.,
forcing ourselves to look others in the eyes, not stimming,1 etc.).
The social model,which I and many other autistics prefer, considers that
if someone has difficulties fitting in that is because there are
barriers that should be removed; society must work to eliminate
discrimination and accept us as we are in all our diversity. While the
medical model finds autism to be a problem that must ideally be cured
and suggests interventions, the social model promotes equality, respect
and inclusion.

Autism Spectrum Disorder (ASD), on the spectrum, Asperger’s Syndrome
or type, Aspie, high (HFA) and low functioning and classic autism, etc.
– a great many terms are used to label us, but we tend to use fewer to
express our identities. One reason for so many is to reflect the
diversity of autistics. A common saying, attributed to Lorna Wing, is
that once you’ve met one autistic, you’ve met one autistic. Several of
these words classify us along a spectrum with abilities ranging from
very poor (low-functioning autism and classic autism) to above average
(high-functioning autism and Asperger). This neat continuum, however,
does not match the more complex reality. Some autistics will find some
tasks very easy some days and impossible to do at other times;
individual profiles tend to be spiky and changeable. Although my
diagnosis was ‘on the autistic spectrum – of the Asperger’s type’, I
feel that it is more inclusive to identify simply as autistic and
support everyone in this constellation of diagnoses and identities.

What about everyone else – the non-autistics? A word often used by
autistics (and others) to describe most of those who are not is
‘neurotypical’ (i.e., have a typical brain), abbreviated as NT. The
world is made up of neurodiverse individuals: people with a variety of
brains and minds, most are neurotypical and some are neurodivergent
including autistics and everyone else whose brain is not typical (e.g.,
epileptic, dyslexic, etc.). Being neurodivergent is not intrinsically
positive or negative. The social model celebrates a neurodiverse world
in which autistics are fully accepted with all our differences, a world
I want to live in.

To explore some of these issues in more depth, here are a few good
starting points: